I'm up all night in pain and the doctors think that an ambien or a muscle relaxer, (which do not work) I'm up from 1 a.m. on in pain, will help. I'm exhausted, in pain, scared and depressed. I'm tired of everyone saying you'll just have to wait for the surgery in two weeks and deal with it. It's so easy for them to say that. Why do my providers think I need to suffer? I had a 7 cm bone removed from my neck 8 months ago and another 7 cm in 2 weeks. Like this isn't painful..? Advice?
Sorry that this is so bad for you, and that you're expected to hang on until surgery. If you look up 'pain relief' in past discussions, there's a few suggestions which might help you. At least we do understand what you're going through on here, sending you a big hug, wish I could do more...
God Bless, Jules
Mooncat I feel for you!! Funny that's all the prescribe for me too because laying down to sleep, I feel it all pressing, so even trying to sleep, no relief. Do you have a recliner to sleep in, being elevated a little may help? Ice packs & ice chips to suck on. I don't know where I'd be if it wasn't for my practice of yoga (w/o the head rotations lol) & my deep breathing & meditation. Be gentle on yourself, so sorry for your situation. Sending healing prayers your way.
That is very sweet of you. Thanks. Yoga for the neck or just the body? I use to meditate and do tai chi more. I find it hard to seeing I'm so miserable. I'll try and get back into it and try more ice and elevation. Thank you, for your thoughts. Hows is your pain now tbone?
I've not been able to sleep laying flat for a while now- I have a wedge pillow to keep me upright, another couple of pillows on top, and also I've found an orthopaedic V shaped pillow is more comfy to lay on as it keeps the pressure off the sides of my neck. My physio recommended yoga nidra- you can listen to it on youtube- to help you sleep, although I doubt if you're in a lot of pain it'd help. Others on here have said keep busy to distract yourself, and try to think positive and find small things to enjoy- being outside for a walk, see friends, make a nice smoothie if swallowing's hard... although it's all easier said than done, I know, when you're in a bad spell...
Mooncat I do regular yoga, I just don't turn/rotate my head when they direct you to. I keep my head in line w/ my spine at all times. It just really helps me deal w/life & ES. I don't suffer w/the pain like a lot of people do on this site. ES lets me know it's there everyday but the few twinges of pain I get subside within a few moments. That is why I have put off/avoided surgery for so long, but like I mentioned in your other post, the dizziness is wearing on me so I'm trying to seek help again. Take care & go easy on yourself, there is no right or wrong way to handle ES. We all just need to find & do what works for each of us and be here to support. Well wishes to you.
When my face pain returned after 8 months pain free following MVD surgery for trigeminal neuralgia, it returned with a vengence. Prescription pain meds were the only thing that helped knock it down at first, and then over the period of a week or two I was able to wean back off the pain meds as the anti-seizure medication got back up to a helpful level. I know we are all afraid of those medications, but once in a while they just simply help.
I also couldn't sleep laying down for months and use a wedge, even now once in a while, even thought the Trileptal does help subdue the pain to a very manageable level. Also when it was really bad one of the simple things that helped me was a hot wet washcloth soaked in a bowl full of water with about a cup of epson salt. I don't know why it helps, but it soothes my nerve pain. Also taking oral magnesium helps.
I am also having surgery for Eagles, on monday the 20th, and am quite nervous but really hope it works and I can get off the Trileptal at least a bit, I don't like the way it makes me feel. It affects my memory, and slows me down so much. BUT that is preferrable to the pain.
I wish you all the best and do hope the surgery helps you.
Thanks, Jules, I have been sleeping propped up sended you wrote this and it has improved my sleep quality, pain, and bloating/inflammation in my neck. Thank you!
Jules said:
I’ve not been able to sleep laying flat for a while now- I have a wedge pillow to keep me upright, another couple of pillows on top, and also I’ve found an orthopaedic V shaped pillow is more comfy to lay on as it keeps the pressure off the sides of my neck. My physio recommended yoga nidra- you can listen to it on youtube- to help you sleep, although I doubt if you’re in a lot of pain it’d help. Others on here have said keep busy to distract yourself, and try to think positive and find small things to enjoy- being outside for a walk, see friends, make a nice smoothie if swallowing’s hard… although it’s all easier said than done, I know, when you’re in a bad spell…
Tbone, thanks for your support. I have suffered dizzy almost passing out episodes fro ES which subside after removing 7 cm of ossified style hyoid ligament from my neck.nthe carotid and jugular vein were wrapped around the ossified ligament so exertion or turning head, sleeping position would cut off blood flow to my brain.n
I started listening to guided inergery pain management YouTube videos and mind healing body stuff that helps to be present with symptoms.nsurguey on left side in one week. This is a scary disease. Best wishes.
tbone said:
Mooncat I do regular yoga, I just don’t turn/rotate my head when they direct you to. I keep my head in line w/ my spine at all times. It just really helps me deal w/life & ES. I don’t suffer w/the pain like a lot of people do on this site. ES lets me know it’s there everyday but the few twinges of pain I get subside within a few moments. That is why I have put off/avoided surgery for so long, but like I mentioned in your other post, the dizziness is wearing on me so I’m trying to seek help again. Take care & go easy on yourself, there is no right or wrong way to handle ES. We all just need to find & do what works for each of us and be here to support. Well wishes to you.
Hope, best of luck on your surgery. Who is your surgeon? Has he run any blood tests we should do or know how to prevent re Growth?
My surgery is the 23rd. It is scary. Know one knows what one feels and this is such a rare disease. My surgeon put me on oral steroids which has helped so much. It is the only thing aside from narcotics that has brought my quality of life back. Of course I’m up at night now still in pain with no narcotics… But, Im trying to hold on till surgery. Nor sure why the Drs are making me suffer so much.
The good thing is, we know what it causing the pain and can get surgery to get our lives back. Best of luck, keep us posted!
Hope said:
When my face pain returned after 8 months pain free following MVD surgery for trigeminal neuralgia, it returned with a vengence. Prescription pain meds were the only thing that helped knock it down at first, and then over the period of a week or two I was able to wean back off the pain meds as the anti-seizure medication got back up to a helpful level. I know we are all afraid of those medications, but once in a while they just simply help.
I also couldn’t sleep laying down for months and use a wedge, even now once in a while, even thought the Trileptal does help subdue the pain to a very manageable level. Also when it was really bad one of the simple things that helped me was a hot wet washcloth soaked in a bowl full of water with about a cup of epson salt. I don’t know why it helps, but it soothes my nerve pain. Also taking oral magnesium helps.
I am also having surgery for Eagles, on monday the 20th, and am quite nervous but really hope it works and I can get off the Trileptal at least a bit, I don’t like the way it makes me feel. It affects my memory, and slows me down so much. BUT that is preferrable to the pain.
I wish you all the best and do hope the surgery helps you.
My surgeon, dr. Ellison at Duke, Raliegh, NC, has perscribed me oral narcotics. This has been the only thing that has helped to bring back my quality of life. Of course, I’ve been up sense 3 a.m.m in pain, but having that inflammation dissipate has done wonders, surgery next week to remove 7 cm of ossified ligament and sty loud process.
This is a scary, unknown disease. Thank you, for this site and your support.
Good luck with your surgery next week mooncat, hope that all goes well, please keep us informed. Glad sleeping propped up has helped a bit- that was advice I was given on here. It helps especially if blood vessels are affected I think.
good luck with ypur surgery mooncat! We will be recovering together. what day is your surgery? Mine is monday the 20th.
what bloodwork did you have done, or someone have done to see if it will regrow?
all the best, Hope
Best wishes Mooncat. One more to go & they will be out, just hold on to that thought, relief is around the corner! l'll be praying for you. Let us know how your getting along, after surgery, when your up to it.
Mooncat, Hope Best luck on your surgery!
Praying you will have instant relief from your pain when you wake up after surgery tomorrow. I know you will be sore from the surgery but my hope is the styloid pain will be gone.
I'm counting the days till my second surgery as well.
:)
goodluck mooncat! I had mine on Monday. I guess I was lucky and my bone was growing forward so the saw it right away which made the surgery easier. mine was also a lot shorter than yours so can only imagine the relief you will feel. You’re in my prayers!
Hi Hope, and lovely to hear that your op went well, take it easy and we hope that you heal quickly!
One of the women on the forum said she used to eat lots of popsicles every night - I think it was around 30 or something like that and she said that helped her sleep. I guess it must have numbed some of the nerves. When you're in such bad pain, nights are just the worst.
Ice makes me worse- sets the nerve pain off badly, I do better with heat from a hot water bottle wrapped round my neck!